How do you share with spouse what you are going through?

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I told my husband that my gyn was pretty sure I had LS.  I told him that it is a skin disease and I would need treatment with steroids for life.  It has been quite awhile since we have had sex without it hurting, but I always just assumed it was from menopaus.  I didnt't make a big deal about the sex just told him we would be able to have sex as soon as "this" is under control. The only symtoms I told him I have is irritation and burning.  I haven't told him about the fusing.  Most days I go around walking slowly, gently sitting down, and spending lots of time in the bathroom.  He doesn't say anything and neither do I. He just thinks I have some irritation I'm sure. Throughout the years we have had a good sex life,  We still have a good relationship. I am a strong woman...divorced for 12 years. But,  I feel if he knew how bad it is, he would see me differently. I'm sure the problem is that I see myself differently.  Anyway how much do you share with yours spouses?  Do you talk about the details of LS?  Do they know how miserable you are sometimes? 

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  • Posted

    My husband has been to all of my appointments since the beginning.  My vagina was completely closed.  He has been completely supportive and the doctor includes him in all of the process.  They can't really understand how miserable you are but they can sympathize and help you.
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  • Posted

    I find it difficult to talk about it as well to my husband - mainly because I get so upset and this then turns into a flare up. I ended getting him to read certain things and discussed the importance of him having an understanding. Why sometimes I can't do a workout, walk, swim, run and do what I would normally. Why I spend a small fortune on gyno visits, dermatologist and GP and compound pharmacy ointments, etc that really don't ever clear anything up. Why sometimes I'm so angry and sometimes so sad and why I can't have these extremes to my moods. What the outcomes are and why I keep doing the same thing in the hope that maybe it might turn it around one day.  

    We have moved on to companion stage of our marriage and whilst this is difficult we still hug, kiss and love one another. I guess it's about finding a common ground that will work for you both. Good luck x

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  • Posted

    At first I was ashamed that my bits down there are different but when I had shoulder surgery and he had to put the ointment on he did not even know it was different lol! 

    It does get better dealing with it. 

    My main worry is if I cannot pee what will happen?

    We have been married for 50 years and together two before that so we are friends first and foremost. 

    Sex is important but it is not everything.

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  • Posted

    my husband is my best frind and my rock,it was him who insisted i went to my GP,he`s the one who checks daily for any differences and he is the one that doesn`t want to have sex in case i`m in pain,he is so so patient and insists he`ll wait for sex until i`m ready,i`m the one who feels guilty that he is waiting! he is so understanding its unreal.i have definitely got that one in a million.i find it odd that other husbands aren`t like him about LS,he did all the research and hugs me when i need it.he understands when i`m in pain and tries to help with anything to ease the pain.I am so lucky to have him

     

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  • Posted

    Hi judy, My hubby is kept fully in the picture. As I see it ,if I don't inform him fully then he can't support me fully. Don't be afraid, you deserve to have the support you need from him. LS is something that isn't likely to go away anytime soon. It's a new chapter in your relationship. Keep him aware of what you know and how you feel. Include him in your situation as LS is something that affects both of you in different ways. Don't keep anything a secret from him and hopefully he will have a better understanding of any suffering you may have which would help him to be as supportive as he is prepared to be. Sharing your whole experience with him will help you to feel less alone so don't forget a trouble shared is a trouble halved. 
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    • Posted

      Thank you Normal...I have to get myself in the right place first.   I know he has to know what is happening.  
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  • Posted

    First of all for anyone worrying about closing up so much that you cannot pee...this happened to me.  It all of a sudden got to the place where it would take me about 15 min. to empty my bladder because I would just drip.  I was totally fused.  They got me in right away to a urologist and got me opened up.  That was a few years ago and since I am so faithful with my CLOB cream, I have not had anymore problems urinating.  How bad is it though when the urologist didn't even know what Lichens Sclerosus was??? Now to the question about the husband knowing.  My gyne. made sure that my husband came to a few of my visits which was a good thing because she insured him that I had done nothing wrong to cause this.  You never know what might be going through your hubby's mind so at least he knew that this wasn't something that was my fault and was nothing that he could catch.  The bad thing was that I was fused so bad that my dr. had him "pull on my labia" every night to try to unfuse.  THIS WAS DEVASTATING TO ME.  Every time I look at him now I feel like a freak.  I know that he knows how I am no longer "normal looking" down there. Once I was referred to a Morgantown, WV doctor and then a dr. from Cleveland Clinic...both of these doctors did not think it was a good idea to "pull".  They thought that the cream should unfuse, not the pulling.
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    • Posted

      beth, it is unbelievable how really uninformed these doctors are.  My gyn knows almost nothing about it and seems not to want to know much.  It really makes me angry too when your gyn is a woman.  Yes that is exactly what I was trying to say. I don't want him to know that I don't look normal there anymore.
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  • Posted

    Judy, you are so right!  I live in the states and I'm not sure where you are, but my gyne. has really tried helping me although I can tell that she doesn't deal with this disease very often.  She at one time did say I was her worst case.  She has referred me to Morgantown, WV and then Cleveland Clinic in Ohio which is one of the best in the United States. Honestly, neither Morgantown or Cleveland Clinic changed very much from what my original gyne said other than "no pulling".  I am so very frustrated as I know you are...it's so hard to not just sit and cry all of the time.  I wish you the very best and hope things improve for you!
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    • Posted

      Thank you beth.  Yes I am in the states and I have been referred to St Louis Vulva Clinic.  We will need to compare.  Best to you too.  
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    • Posted

      Hi Beth,  I just wanted to say that there is no normal to our bits.  Everyone is different.  I have seen photos of women who have lots of loose skin flaps (which I presume are lips) around their vagina.  I never had these.  I do not show my husband all the time but occasionally when I am worried about anything he will look for me and help reassure me.  I can't believe how insensitive some doctors can be.  I wonder if they would like their penis foreskin pulled in the wrong direction.  You should be reassured to know that your husband obviously loves you to have tried to help you in that way.  Do not worry that he thinks of you any differently.  He loves you and that is obviously more important.  Like any disfigurement he sees past it to the person he loves...you.  You are not a clitoris or vagina but a whole person with a personality.  We tend to concentrate on ourselves too much with this condition.  Concentrate more on loving your husband for being so caring.  I have a brilliant friendship with my husband. No sex for quite a few years but what has replaced the sex is the most wonderful trusting relationship.  
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  • Posted

    I showed my husband when I first noticed a problem and he came with me to my initial GP appointment and then to every subsequent specialist appointment. He supports me completely. But as things deteriorated I stopped showing him as I couldn't bear him to see how deformed I had become. So of course I became reticent about sex and we have now stopped that side of things completely even though I think I still physically could but mentally I can't cope with it. It IS sad because we were always really good together that way and I reckon we had a good few years left in us. But he still supports me completely and we still cuddle and as Deb stays still hug and kiss and love one another.
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